still plodding along pred-less | Arthritis Information

Hi all, I've finally summoned up a bit of energy to write. I hope you are all having a better year than the last. I am over a month without pred now and not feeling great if I tell the truth. However, one does not feel great with PMR, so I didn't expect to. PMR is still there, a bit worse in fact. However, the nagging pains and stiffness are not as bad as the fatigue, and I often feel I don't think I can get through the day (altho I always seem to manage to).

So am I going back to pred? No no no. Although pred took away the pains and stiffness, it didn't do a lot for fatigue, and, in my case, generated extra stress about side-effects, caused endless thrush infections, interfered with my sleep and ultimately gave me a jelly-belly I am still trying to get rid of. Overall, I felt a lot better on pred, of course, as even if one is fatigued, being free of pain and stiffness counts for a lot! But I definitely do not wish to start prednisone again and at this stage I am determined to press on without it. I would only ever take it again, if I developed GCA. My ESR has not gone up and I am having regular check-ups and blood tests.

I would estimate that I am operating at much less than 50% normal capacity. I'm probably running on about 25%. Of course I can't complain too much to the doc about it, if I won't take my medicine! I am asking for a referral to physiotherapy to get some sort of exercise programme to help keep my muscles from seizing up.

Living with untreated PMR is a miserable business, but it can be done, and I don't feel all bad all the time, but very aware that this could go on for a long long time yet. Chico - sorry to hear your struggles. I thought I was way better then down the hole I went. Are you taking any pain meds - any NSAIDS? I too have been pred free since jan 1st. I am pretty much homebound. When I do go out it is very difficult and slow going. I go as long as I can till i cant take it then take my NSAID. I dont like taking those either but I have to have some relief every once in a while.

I am still looking for the big hope. I get regular massages which i enjoy. I would like to join a facility that has a steam room and whirlpool. I just dread having to get dressed and then go there. My knees are bad and my right arm is frozen. My hips are better but I still have much trouble lifting my legs to bed and getting in my truck. One thing I dont have is the fatique. Are you sleeping well? Since I got an adjustable bed I sleep great - it is so comfortable I actually cant wait to go to bed. I do sometimes take a nap in the afternoon.

I have read that mangosteen juice has anti imflammatory properties so I bought some and I thought it made me feel better but I couldnt find that brand again. In my small town it is hard to find some things. I have had to order some through the internet.

I also read that a german clinical study showed that pine bark extract - pycnogenol is the trademark brand name - look for that - 200 mg a day showed improvement in inflammation. Vitamin Shoppe has a good sale on right now on its own brand. Here is the web site for the manufacturer - it is a great site and has good info on this and even lists the companies that sells it.... http://www.pycnogenol.com/consumer/consumer_about.php

please check this out. I am constantly looking for what our bodies need...I am conviced that it aint pred....I know what you mean Chico - loosing the worry over taking that stuff has helped me cope. I feel like I would rather see where this disease goes on its own course. Good luck to all.

Hi chico and everyone, I know you are happy being off the pred. I have been pred free since Oct. I still take 2,000mg of vit C a day along with a multi Vit. I go for blood test this week and can't wait to see my results. Next week I see the Dr. I hope he is happy with my decision to go off the pred. I am still suagar free and doing the anti inflamatory diet.

smartie I also have an adjustable bed and love it. I have had mine for 10 years now and my sisters have now bought one.

chico, keep us posted and sure hope you get rid of that fatigued feeling. I think that is what I hated most about the PMR. Geri

Geri - forgot your story - did your pred burn out or are you a rebel? Are you taking any pain meds or NSAIDS? What is your pain like - if you have any? If an adjustable bed is out of anyones budget - check the medical stores for a rental or maybe your insurance will help you out. Thanks Smartie for the very interesting info and links! have not had any luck with finding mangosteen juice yet, but of course with the www everything is possible!! I am sorry to hear you have pain, and a frozen shoulder is awful. Here's hoping we all find the magic bullet soon. No, I'm not sleeping well, due to hip pain (it's not the joint, it's the bursa) and because I have trouble turning over in bed. After 3 or 4 nights like this I have one good night's sleep, due to exhaustion. lol. I will enquire about adjustable beds, but don't think I can afford it just now. I currently have a good quality expensive mattress, with a 2 inch memory foam topper pad which is WONDERFUL and very very helpful. However, if anyone gets one, make sure you air it thoroughly in the open air for at least 2 weeks before you use it, to de-gas it! I hate to think what sort of toxic petrochemicals are in it, but it sure helps the PMR. Still surviving, have some very good days and some very bad. I wonder how it can be that one can feel so different on different days! Yesterday had my first physiotherapy session and that was very helpful, have a programme of exercises to help my muscles and movement. The physiotherapist had a lot of charts and models of "stripped down" bodies, ie showing muscles and nerves etc and that was really useful as he explained what was happening to cause my pain and stiffness, even though I knew it already, a visual explanation was excellent.
meanwhile had another blood test and ESR is still OK so I am pleased with that.
Chico, I'm still plodding along without Prednisone too. I took a 10 dose of it the first of the year because of a pain in the side of my ear, and doctor was not sure it wasn't GCA, so she prescribed the prednisone for 10 days and an antibiotic.

Right after Christmas, I thought PMR was going away and I woke up about three days without any pain anyway. It was fantastic. Then the pain turned up by my ear, which evidently was an ear ache. I've had them my entire life.

I now have regressed back to about October 06, with being stiff and sore. I've now been diagnosed with PMR for 18 months. I'm rotate between aspirin, tylenol and naproxen..

I think this stuff just has to burn out. Mary

Hi smartie, my story is a long workers comp story. I injuried myself at work n 97. took them 1 1/2 years to do anything. I had surgery at C5 and C6 with a fusion. Then they did acromyplasty of my right shoulder, which didn't work. I had a tear, but they decided not to fix it. I finally finished with workers comp after 3 1/2 years and still a lot of pain, I went to Indianapolis to have a shoulder specialist look at me. He cut the biscept tendon and hoped it would help. He said they left me tooo long and the damage was done. So I went along my way with pain meds and muscles relaxers and an antidepressant. I also work with a nuro physchologist. She is wonderful. Thought I was doing ok till Feb of 2007, I slept the whole month and I couldn't lift the covers over my head, my shoulders were killing me. I called my Neruo Dr because I thought I was going crazy. She knew what was happening and sent me to a Rhemy Dr. He knew what was wrong and sent me for blood test right away. He thinks I had it for quite some time but it just got worse. Put me on Pred in April of 07. I keep going for blood test every month and my rates were increasing. I knew I had to do something. The pred was driving me crazy with the sweating. I would change clothes a couple times a day. I found on this forum or the Canada forum about night shades and this no sugar anti inflamatory diet. So I researched it and started in Oct of 07. With in 3 days I knew it was helping me. So I started reducing the pred how Ragnar was saying and was able to get off the pred free of pain. My last blood test did show my blood test to be coming down quite a bit. The dr did not know I was doing this. I saw him in Oct and then this month. He was happy with what I was doing and the results. He did say if I need the pred again to ask. He thinks it has burned itself out. I just need to stay stresss free. My neuro physchologist helps me with that. I will alway have pain in my neck from my accident. I do take Ultrum a couple times a day for pain. It did not help with the PMR. I pray for everyone with PMR to find relief from this and to some day be PMR free.

Hugs to all, Geri